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Sunday, February 23, 2014

AAC by 18 months

I have taken part in a lot of conversations about using AAC (in online forums, in real life, and via email) and one of the most popular reasons that I hear about waiting to try AAC with a child is age. Here are some samples:

"C is only 4, no one in the preschool knows anything about AAC so we're going to wait until she can be evaluated in kindergarten."

"He just started kindergarten and the teachers are getting to know him. They plan to submit a request for an assistive tech eval at the end of the month."

"He's three and a half and I wonder if he might be able to use some AAC but the speech pathologist says that he's making steady progress so we should hold off until he's a little older."

When people ask when we started using AAC with Maya, I'm as honest as I can be (because really, it's hard to remember). I know we were doing some picture card stuff (and signing) before we got an iPad. I know we got the iPad when she was 2.5 years old (only 5 or 6 months after its release, so we couldn't have moved much faster on that), and we started using a communication app immediately. Over the course of the following year (2.5-3.5 years old) we did a mish-mash of that app (which had turned out to be less than ideal), the Word Book, a trial of another device, and probably some things that I'm forgetting. Finally, at 3.5 years old, we found the Speak for Yourself app and ran (fast) with it. (This video shows our communication highlights from 2 yrs old to 5 years old. )

So, at 2.5 years old we were experimenting and practicing and encouraging and trying to figure out a system that could work . . . and at 3.5 years old we found the system that could work (and we literally couldn't have found it sooner---I think we downloaded the app only two weeks after it was put on the market).

We should have started sooner.

I hate that we didn't start sooner. I'm not one to hold a grudge, but on this I do . . . one of Maya's therapists (we had a bunch of them) or doctors (boy, we had a bunch of them) should have told me, at her first birthday or shortly thereafter, when she clearly wasn't near ready to speak (no motor planning, minimal sounds, etc) "Hey there are some other ways of communication out there---some stuff with technology---and you might want to look into some of it. Or at least put it in the back of your mind."

Why didn't anyone tell us that we should have started so young? Well, for one, iPads didn't exist when Maya was 1, and maybe doctors weren't familiar with the stand-alone devices (many of which wouldn't have worked for a 1 year old anyway, with their non-toddler-friendly organization). The therapists should have known though---high tech or low tech or photo cards or something. Something.

Someone should have told us to start younger. Someone should have been aware of the communication options out there. Someone should have known that the research says to start young. Someone should have told us that there was a way that we could be providing our silent child with a voice, a way to tell us all of the things that she wanted to say.

And so here I am, years later. I am aware of the options out there, and I am aware of the research, and I am telling you to start young.

Start now.

The title of the blog post came from the recommendation of a highly respected AAC expert, when she was asked about the appropriate age to introduce AAC to a young user. And that's not start around 18 months, that's you should really be on it by 18 months.

Sound crazy? Think it's too young? Let me introduce you to Will.

Will is the (almost) 17 month old little brother of Maya (a 5 year old AAC user). He has been tangentially exposed to her talker since birth, although most of his hands-on interaction with it consists of "Hey! Will!! Do not take Maya's talker, it belongs to her!" and then I take it away, and then he cries. Yesterday morning, after several of these encounters in a row, I got our "play" iPad out and locked him into the communication app (using guided access). I configured the screen appropriately for a very young user, with mostly 1-hit core words (yes, no, mine, more, help, eat, drink, please) and one highly motivating category (family, which has pictures and names of many family members). After less than 3 minutes, he was using the app purposefully, and I grabbed my video camera and started recording.

(almost) 17 months old. (almost) 7 minutes.

Is this typical? Who knows. (How could we define "typical" for an AAC user anyway, as that population is basically complex by definition). Will has the benefit of understanding (from birth) that this device is a voice, it's used to talk, etc, so we didn't have to help him connect those dots. Also, Maya's fine motor skills were no where near his at this age, so she would have been a much slower user . . . but how quickly would she have had the excitement of at least understanding the idea---that she can boss us around, say what she wants, ask for something that isn't close enough to point to? It's amazing!

In the next two videos, taken about 10 minutes after that first video, he is already moving past exploring the words and using a combination of AAC, word approximations, sounds, and gestures to tell me that he wants to call Grandma on the phone---something that he wouldn't have been able to communicate without AAC, as he doesn't have a vocal approximation for "Grandma" that I would understand. (He's starting to get it in the "part 2" video and really nails it in "part 3.")

He used the talker all day yesterday. When he woke up this morning, it was the first thing he was looking for---to tell us that he wanted to eat and then to have a drink, to ask again to call Grandma on the phone. He has a voice today that he didn't have yesterday, and he knows it. I think about the parents out there who have kids who are 3, 4, 5 years old . . . or 8, or 12, or 18. The parents who are waiting because they don't have anyone telling them to start young.

I'm telling you to start young.

This was my favorite video, which takes you through the complete learning of a new word. I hadn't used "drink" with him at all before the start of this video. We kept things light and fun and silly and boy, did he learn "drink" quickly :) Enjoy the giggles.

If you are thinking "well, easy for you to say, he's a "typical" kid without delays" . . . well, you're right. But I was told that Maya's cognitive functioning was in the 0.4th percentile, and I believed that she could do it, too. You may have to model for a while before your child responds---but we speak to kids from the moment they are born and don't expect them to talk back for nearly a year. I modeled sign language to Maya for months before she signed back. This is even easier than that---you don't have to learn signs, you just tap a button now and again as you talk.

AAC by 18 months. If your child is older than 18 months, and you're wondering when to start, the answer is now. If your child is younger than 18 months, but old enough to know that you are dealing with a significant speech issue, and you're wondering when to start, the answer is now.

10 comments:

Anonymous
said...

This is great advice. I have been going against the therapists advice and using AAC (PECS and ipad) for 20 months now, wish we had started sooner. My daughter is 4.5 and has 20 or 30 spoken words. At her latest annual review, the doctor still questioned whether it was useful! They are WAY more behind on AAC use here in france.

I wonder if I can get some input from you as a parent. I am a speech pathologist in a therapeutic school and work with children from 3 to 21. I am a cheerleader for AAC, but often times find that my enthusiasm is not always matched by teachers, paraprofessionals, administrators and even parents. Because I have direct contact with individuals in the school I am more confident in my ability to show through example the benefits of AAC, as well as educate and encourage. When it comes to the home, I struggle to find ways to support AAC without coming across as pushy, domineering or apathetic to the many challenges they face at home. Any advice as a parent who has worked and collaborated with many professionals?

You have me convinced! My daughter just turned 3 and she is verbal but has very poor articulation, likely due to a combo of hearing loss, low tone, high palate etc. I understand 50% of what she says at best, and most people don't understand much at all. I would really like to try something for her but I'm not quite willing to shell out 300 bucks for speak for yourself - I'd like to test drive a cheaper option first to see how it works and to make sure I want to make that investment. Are there are any decent, cheaper apps? Maybe something pretty basic?

I am studying to be a language pathologist... and I am so sorry to hear the state of SLP therapy right now! I cannot fathom why they would all be turning down ANY possibility of linguistic exersise. It is so frustrating. So many SLPs push away anything that isn't speech, when the goal ought to be communication. I don't buy the idea that focusing on signing or AAC takes away from a kid's potential to speak. Language learning is one big pot.

Check out this enlightened SLP's work... She has made a list of AAC tools and rated them. http://www.janefarrall.com/

I really enjoyed your post. May I include a link to this in a website I’m creating? It’s for parents/anyone who want to know more about autism and is a doorway to AUTISTIC voices/bloggers and neurodiversity friendly parents/professionals. The website is under construction but the facebook page (Autistikids) is up and running - full of links to the same type of posts. I can be reached at autistikids@gmail.com if you have any questions. Thank you!

Thank you so much for this post, my son is 14 months and just been diagnosed with Autism, he has no words or babbling such as mum, mum, mum, or dadada, i keep getting told not to worry as he is still young and let him just be a baby, but he is getting more and more frustrated at not been able to communicate. I have no idea where or when to start, so will read your post again and try to figure out what to do, thanks for sharing,

I love reading your posts! I contacted you because I was so moved by your video of Maya's progress. I work with children who have vision and hearing challenges (together)...and I push for early AAC use...but so many times, we hear the same thing...they re not ready....REALLY...not ready, what are you waiting for...it is frustrating...but I am hoping to make a difference in the way that children are assessed...I'm working on it for my doctorate...and will continue to follow Uncommon Sense! Thanks so much!!! Donna from Kentucky!

Yes! Start early! There were no electronics like this when our son was little. But he was desperate to communicate--lots of tantrums when we couldn't understand him. Sign language lessened his frustration. Then he started his own language using sounds he was able to make. We listened to docs who told us boys' speech development often lags, and lost a year before finding a speech therapist who worked miracles. Turned out he has verbal apraxia as well as several other challenges. You know your child. Go with your gut. Helping them communicate and helping them be understood is a gift. Signing and other assists will NOT slow their speech development, but it can decrease anxiety.

I think it's great that you're putting the message out there Dana. I also think it's sad how many parents are resistant to AAC because they are holding onto hope that their child will outgrow their speech difficulties. Particularly when the child seems to have some ability to speak. If a child "doesn't need it" then they will graduate to not needing it when it becomes easier to speak than to use the device. Even with the best AAC systems verbal speech is easier, so parents should not worry that AAC will be the "easy way out". That's not the way it works, but until you've used AAC devices you don't understand that.